The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, we’ve had difficulty affording supplemental educational support for our son. These costs limit what we have available to maintain our home properly. We’ve had to put off costly repairs due to not having the funds needed. The diet necessitates the need for accommodations with a kitchen whenever we need to be away from home, since his dietary needs (calories and restricted phenylalanine) can’t be met at a restaurant alone. Even then, it’s difficult to find somewhere to eat that has something appropriate for the diet. Without these additional costs, we wouldn’t have a problem with any of the above mentioned challenges.
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself. Please, help!